Newly diagnosed - will probably have lots of questions.

[SeasideSusie]

Hi, this is my first visit after finding this community. I know I've got a lot to learn and I'm the sort of person who likes to know, have things explained and, if possible, do as much as I can to help myself.

After an 8 month "journey" of doctor and hospital visits (heart checked as well as lungs because of family heart history), I finally found out two weeks ago that the consultant had diagnosed COPD "possibly due to smoking" although I gave up over 30 years ago. My main symptom was breathlessness but now I realise that I've had a mucous cough for a few years which was ignored by my GP as I couldn't bring up any mucous for a sample to be tested for infection and that this was probably the first indication.

My first question is whether most people just get told it's "COPD" and not exactly which disease. I wasn't expecting this diagnosis and the GP didn't even tell me, just said that I needed inhaler therapy. I found out when I had to see the nurse to teach me how to use an inhaler, my GP didn't even tell me why I needed an inhaler. I asked the nurse what the consultant's letter said and she just told me COPD possibly due to smoking. I was so shocked I couldn't think of anything to ask at the time but I'm writing down things to mention when I go back in a couple of weeks.

So I don't know what disease I've got, and I've been given the blue Ventolin inhaler (Sambutamol) to use 4 times a day, two puffs each time. I'm managing on 3 times a day mostly - before each of my dog's two walks (one morning, one afternoon) and the third one before bed.

I've found that I'm not producing as much mucous since starting the inhaler, and the breathlessness isn't quite so bad when out walking, but I have noticed that my chest sometimes feels tight and sometimes it feels as thought there's a weight on it. I don't think I noticed these things before starting the inhaler. Has anyone had these effects before? Do you think it could be the Sambutamol not being the correct medication and something else could be given instead?

I'm waiting for some literature to come from BLF. Are there things I can do to help myself? Any natural remedies, complementary therapies, etc.?

[Puffthemagicdragon]

Hi and welcome SeasideSusie.

The first thing your doctor should do is to get you an appointment at your local hospital with a pulmonary consultant to have proper tests done and a CT scan. Tell him you want one. I had to change my doctor as he was not exactly helpful.

Until then the best thing , if you don't smoke, is to exercise. It doesn't have to be a lot but anything is better than nothing.

[SeasideSusie in reply to Puffthemagicdragon]

Thanks Puff. I've seen the cardio-respiratory consultant, had heart scans and stress echo plus full lung function tests, they were done in January. No CT scan was done though. The consultant wrote to my GP with his diagnosis so I assume he was satisfied enough with the tests I had to enable him to make his diagnosis.

The nurse at the GP's COPD clinic asked me about exercise and I told her I was out with my dog for a total of up to two hours a day, although not power walking as dog is a plodder and a sniffer so more of a stroll! She seemed satisfied with that. Nothing else was mentioned. Are there any other exercises that may help?

Unfortunately I can't change to another GP surgery, I live fairly rural and this surgery covers a big area, nowhere else to go I'm afraid. There are four doctors and I always try to make my appointments with my own GP as she knows me well enough to know I like to know everything, unfortunately she was away when I went to get the diagnosis so had to see one of the others. I could make an appointment with her but to be honest I think the COPD clinic nurse will be more useful to me as she runs that clinic and probably has more experience with the COPD patients on a regular basis than the GPs.

[Jester in reply to SeasideSusie]

Got a handle on it not much more can add

[Puffthemagicdragon in reply to SeasideSusie]

Perhaps your doctor is ok then if he has the results. Walking two hours a day as a lot more than a lot of us can do so that sounds like exercise enough.

[Hidden]

Hi Seaside Susie

Just checking - we have a booklet on complimentary therapies, I'm not sure if you asked us for one or not if you have no worries but if not if you message me direct with your details I'll send one out to you along with any info on services etc in your area if I can (the unhelpful bit is that I'm away from the office Mon til Thurs) but if you can let me know today I can sort it or ring us at the helpline and this can also be done by a colleague.

Anyway good to hear from you. (BLF helpline no: 03000 030 555)

Heych

[SeasideSusie in reply to Hidden]

Thanks Helen, I've sent you a message.

[Lynne1955]

Just saying hello Sue. 30 years seems a long time for symptoms to develop, but I would ring the BLF and have a chat, they are really helpful.

I have moderate copd and was diagnosed last year at age 57. In effect, I have emphysema caused mostly by smoking, but since diagnosis, and learning a lot on here, I think childhood bronchitis and whooping cough may have contributed to weakening my lungs.

I stopped smoking 15 months ago, before I had any symptoms, those only happened about 3 months after I gave up. I do find aerobic exercise helps and go to a gym using the treadmill, bike and rowing machine. I also do a lot of gardening, including tending our allotment.

Lynne xx

[SeasideSusie in reply to Lynne1955]

Hi Lynne, thanks for welcome.

When I first went to see my GP, the nurse for spirometry, a different nurse for ECG, then the hospital consultant, when going through my history they all said they didn't think smoking had caused it due to my giving up over 30 years ago. The poor family heart history was taken into account hence the heart tests and it found one lazy or blocked valve which the consultant said was low risk and is not being pursued. There are no environmental reasons for the breathlessness either, not work related, so presumably the lung function test results could only be put down to smoking. In total I smoked for approx 15 years (did have a couple of breaks during that time but went back to it), and at the end 20 a day, but it was around 1982/83 that I gave up. I am 65 now.

I haven't been told what stage my COPD is at so that's another question for when I go back to see the nurse. I will also ask about exercise as I think that needs looking into.

[sitstand in reply to SeasideSusie]

Ask your doctor for a referral into Pulmonary Rehabilitation this will answer many questions through education as the exercises that are our most effective treatment are taught in a sociable atmosphere with fellow lung sufferers. Welcome and ask away

[SeasideSusie in reply to sitstand]

Thanks Sitstand. Our main hospital is 60 miles away and I don't know if it's available there, but a search brings up

".....worryingly poor pulmonary rehabilitation services in Wales. Over half of Wales has no pulmonary rehabilitation service at all including the whole of Powys. In other parts of Wales waiting lists to attend pulmonary rehabilitation run up to 18 months. In many areas it is impossible for people to attend because of their distance from locations where pulmonary rehabilitation is available"

so it's not encouraging (I live in north Wales). However, I will ask the nurse when I go.

[Pepsicoley]

Hello Susie

I found this forum a short while ago and was relieved to know that there are other people who know how I am feeling. I was diagnosed with lung cancer in 2009, had one lobe rmoved from my right lung and then in 2011 had another op (on my left lung); wedge sections were removed but found to be not at all sinister. Inbetween times, I have had four DVT's and four pulmonary emboli. I had absolutely wonderful treatment from the two hospitals (Plymouth and Truro) concerned and cannot express how grateful I am to all who looked after me. I have been told, variously, that I have COPD, emphysema and on Christmas Day 2012 was told by paramedics who attended me that I had had an acute asthmatic attack. I am putting all of this down to smoking (although I didn't smoke a lot I must have smoked enough!!). I have not spoken to anyone who specialises in cancer treatments or seen anyone in respect of the COPD, asthma or emphysema. After reading the comments on this page, I will be attending my GP's surgery on Monday and ask for some help. I am very breathless most of the time and I am very, very, tired. The worst thing, I find, is the fear when I am really breathless and I feel that I am going to die.

I wish you all the luck in the world Susie and hope that treatment from your specialists sorts out your problems.

Kind regards

Annec _ xx

[SeasideSusie in reply to Pepsicoley]

Hi Anne

So sorry that you've had to go through so much. I hope your GP appointment goes well on Monday and you get the help you need, come back and tell us how it went.

My worst moment with my breathlessness was just about 12 months ago when we were in the middle of a very cold spell. I was on the beach with my dog and she'd gone up the sand dunes. I knew what she wanted up there (not pleasant, wont put it on here!) so I climbed up after her in quite a rush and it hit me like a ton of bricks - I could barely breathe, absolutely gasping and couldn't get enough air, I thought I was going to pass out. I had to sit down and try to get my breath. It was very frightening, there was no-one about and I got really worried. I now take my mobile phone with me but, of course, I've since learned to pace myself, and know what I'm capable of, plus my dog's now got a better recall and unless the "treasure" is something as precious as a really smelly dead seal then she's pretty good LOL!!

[Pepsicoley in reply to SeasideSusie]

Hi Susie

Thank you so much for your post. It really does make me feel better. I am finding that I do have to pace myself and if I need to stop then I stop (even though passers by probably think I have a screw loose). I'm off to see my son who lives up in Bristol at the end of this month. He was diagnosed with bowel cancer last September and I go up once a month to be with him at some of his chemotherapy sessions. At the moment I am feeling really down (mainly because of my son, David, going through the chemo) but there are 'up' times. My Godson and his partner had a little boy today - no name yet but he is absolutely gorgeous.

Take care and don't run up any more sand dunes!!!!!!

Annec

[Puffthemagicdragon]

The fear of feeling like you are going to die hits us all to begin with I think. The knack is to do the opposite of what the brain says do. Try to breath a bit deeper and slower and exhale for longer than you inhale. Try to relax. Your breath will soon return to normal. You should be getting better treatment in my opinion but I'm no doctor.

[Pepsicoley in reply to Puffthemagicdragon]

Hello Magic Dragon (Welsh?)

Thank you for your really nice post. I wondered whether anyone would answer - and it's lovely to know that there are people who are willing to make me feel better.

I do try to relax and tell myself that I am not about to pop off but I find it really difficult - The Christmas Day episode frightened the hell out of me.

I didn't mean to indicate that my GP's Surgery is not too good. They are absolutely fabulous - I expect it is my fault for not asking!

I am really lucky in that my husband is very good and drives me around the country whenever I need to go somewhere. I also have some very good friends (about six - they are really good friends) and they sort me out now and again (take me shopping, girls' nights out etc). I have an awful lot to be thankful for.

Thank you again or your message - I felt quite moved.

I wish you well.

Annec

[Puffthemagicdragon]

I'm not Welsh. I wanted a username about breathing and also a little lighthearted.

You have a good family and friends around you. Although I have been diagnosed, 2 years ago, with very severe emphysema I'm still quite mobile myself and drive myself around. I only get short of breath if I try to do to much in a short period. I still haven't learn't to slow down all the time.

[caroleoctober]

Hi Susie, just to say you can still have a very good life with copd. I have emphysema and was diagnosed 13 years ago, I am now very severe, stage 4, and on oxygen 15/24, the oxygen is not so much to help the breathlessness but to protect the main body organs to ensure they get enough oxygen to work properly. I go out nearly every day either with my husband or by myself, I drive or use my mobility scooter, I spend days out with my family and have holidays in our little caravan and at family that live away. I potter in my little garden and look after my two little shih tsus. So really you can see my life has not altered much except that I gave up work at 67, I am 70 now, and do things more slowly and with rests in between to get my breath. I think I live a full and happy life for someone my age and I posted this just so that you could see that a good life goes on as long as you eat well, avoid infection, excersise and take your meds. My glass is three-quarters full. Oh I forgot to say, I have appointments for assessment for pulmonary lung valves, there is a link to a blog if you are interested: bitz-and-bobz.co.uk/copd/20...

Carole x

[SeasideSusie in reply to caroleoctober]

Hi Carole, thanks for your message. It certainly sounds as though you live life to the full. I'll be learning as much as I can and will continue to be active, I don't intend to stop doing anything I'm doing now. Hopefully my next appointment with the COPD clinic nurse will give me the chance to discuss things further and see if she can recommend some exercises besides just walking the dog. I think she sort of focused on the negative a bit last time, like "can you still make the bed", "can you still do this" and "can you still do that". Perhaps they don't get many people who want to know everything there is to know and want to help themselves!

[caroleoctober in reply to SeasideSusie]

I find it best to make a list of questions, even now, before I go so I don't get outside and think I never asked that. I have a very good nurse who will tell me what I want to know and if she can't answer she will find out for me but then I am also lucky with my doctor as he is a professor and lectures on lung problems at universities. Take care and if you can join a Breathe Easy group near you, you can find the nearest on the BLF website.

[SeasideSusie in reply to caroleoctober]

I've got a list started, I know I'll forget something if I don't write the questions down. I've just had a look for a Breathe Easy group and the nearest one in my area is about 60 miles away. I live in a fairly rural part of north Wales and there's lots of things we don't get locally unfortunately.

[Hidden in reply to SeasideSusie]

Most of these questions are to assess the severity of your condition on the BODE scale - one of the methods used. If you can't dress yourself without getting breathless for instance it would be classed as severe. There is a 'COPD for dummies' book which is quite good but only if you can forgive the fact that it is Americanised.

Lucky

[Hidden in reply to caroleoctober]

Your positive attitude is a tonic. Hope you can continue doing everything you enjoy for many years to come. You have made me count my blessings today x

[Hidden]

When I was diagnosed with COPD I was immediately given symbicort and later spiriva as well as the salbutomel. I couldn't manage without either of them.

Bev x

[SeasideSusie in reply to Hidden]

I've just found out about spiriva as my cousin, who used to have just the salbutomel inhaler like me, now has this, uses it first thing in the morning and now rarely uses the salbutomel inhaler. I'll put it on my list of questions. Do you have to be at a certain stage to have the spiriva added or can it be instead of the salbutomel for someone newly diagnosed?

[Hidden]

I have Spiriva, Fostair (both 'preventers') and Salbutamol and use them all...I think it depends on your local GPs but they must have a rough guide to know when you need which.